دورية أكاديمية
Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.
| العنوان: | Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. |
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| المؤلفون: | Musvipwa F; Department of Medicine, University of Cape Town, Cape Town, South Africa. faith.musvipwa@uct.ac.za.; Ethics Lab Neuroscience Institute, University of Cape Town, Cape Town, South Africa. faith.musvipwa@uct.ac.za., Wonkam A; Department of Medicine, University of Cape Town, Cape Town, South Africa.; Johns Hopkins Department of Genetic Medicine, Baltimore, USA., Berkman B; NIH Department of Bioethics, Department of Bioethics Bethesda, Bethesda, USA., de Vries J; Department of Medicine, University of Cape Town, Cape Town, South Africa.; Ethics Lab Neuroscience Institute, University of Cape Town, Cape Town, South Africa. |
| المصدر: | BMC medical ethics [BMC Med Ethics] 2024 Jun 07; Vol. 25 (1), pp. 67. Date of Electronic Publication: 2024 Jun 07. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: BioMed Central Country of Publication: England NLM ID: 101088680 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6939 (Electronic) Linking ISSN: 14726939 NLM ISO Abbreviation: BMC Med Ethics Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: London : BioMed Central, [2000- |
| مواضيع طبية MeSH: | Research Personnel*/ethics , Genomics*/ethics , Genetic Research*/ethics , Ethics Committees, Research*, Humans ; Africa ; Male ; Female ; Surveys and Questionnaires ; Administrative Personnel/ethics ; Adult ; Feedback ; Middle Aged ; Black People/genetics |
| مستخلص: | Background: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent. Methods: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. Results: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research. Discussion: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination. (© 2024. The Author(s).) |
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| معلومات مُعتمدة: | U54HG009790 H3Africa ELSI Collaborative; U54HG009790 H3Africa ELSI Collaborative; U54HG009790 H3Africa ELSI Collaborative |
| فهرسة مساهمة: | Keywords: Africa; Feedback; Genomics research; Incidental findings; Individual genetic research results |
| تواريخ الأحداث: | Date Created: 20240607 Date Completed: 20240607 Latest Revision: 20240610 |
| رمز التحديث: | 20240610 |
| مُعرف محوري في PubMed: | PMC11157929 |
| DOI: | 10.1186/s12910-024-01068-2 |
| PMID: | 38849807 |
| قاعدة البيانات: | MEDLINE |
Find this article in full text from Springer Verlag. 
Full Text Finder | تدمد: | 1472-6939 |
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| DOI: | 10.1186/s12910-024-01068-2 |